Thursday, April 26, 2012

Heading north.

I'm on my bike, this time riding up the Atlantic Coast from Key West into Cape Breton, Nova Scotia and perhaps farther depending on how bottom and soul feel. And once again I'll opine, observe, harrumph, pass judgement, and post all of that here . . . along with pictures.

However, this time I'm riding with a purpose other than just to experience what it's like to get from here to there under one's own power. This time I'm riding in honor of my sister Deirdre who has ALS, aka, Lou Gehrig's Disease. And I hope to raise some money for the ALS Association.

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease  become totally paralyzed. That means death. There ain't no cure for ALS.  There aren't even any meds to reduce the symptoms.

Only in the last year or two has any headway been made, albeit small, in identifying the origins of hte disease. To make a donation and to learn more about ALS, please go to http://web.alsa.org/goto/deirdresride

As Deirdre recently emailed us, "ALS is not painful thankfully, just debilitating. Slowly you lose control of your muscles which disappear with atrophy. It doesn't matter how fit, hale and hardy you were --- it doesn't discriminate. So I was forced to go from someone who often ate standing up (go, go, go) to someone who has trouble standing up. It is odd to read and watch movies all day without guilt. I'm certainly catching up on those forms of fun."

She uses a voice machine to speak for her but luckily still has enough control of her hands to be able to use the computer. Nourishment comes through a tube into her stomach. The really pissy thing about ALS is that while it destroys the body, the mind stays alert and active. Case in point is Stephen Hawking, the theoretical physicst, cosmologist and author who has had ALS since he was a doctoral student at Cambridge. He is an outlier, an ALS anomaly that no one can explain. Death in ALS usually occurs within 3 to 5 years after diagnosis.

The Nicholas Sparks story of my sister.

Deirdre grew up loving horses.  She was self-taught and fairly successful showing her cheap and ill-suited little mare, Glory, to some year-end championships around eastern PA.  Deirdre and Glory went off to the University of KY where horses became an overwhelming distraction from studies.  Riding was her passion. 


In 1963 Deirdre became engaged to John Winston Dabney,  the handsome, blonde, every-girl-wants-to-get-her-clutches-into son of Lexington's leading banker who was also an accomplished young horseman.  Eventually, they parted with John remaining in Lexington and D. seeking  riding opportunities elsewhere.  They both ended up in the racing industry --- Deirdre breaking and galloping horses in numerous states and John training locally in KY.


Fast forward to Florida in 2000 where Deirdre is living while working at Calder Race Track. One day she receives a phone call: "Deirdre, this is John Dabney. We made a mistake 30 some years ago and I think its time to correct that." For the previous 37 years John had kept track of Deirdre's whereabouts via the truck drivers who haul horses from track to track. "You know where Deirdre Smith is working?" he'd ask occassionally. "Oh, yeah, she's up at Saratoga" or wherever, they'd answer. That's how he found her in Florida.

They married on January 1, 2001 and have lived happily ever after since.  Aiken, SC is their horsey, heavenly home. 


Deirdre and John several years ago with Brawler nudging into the picture.
 

3 comments:

  1. What a beautiful photo! Thank you for including me in the info, I look forward to following your adventure (and any mis-adventures) and learning how to help you & Deirdre.
    Jenn

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  2. Best of luck on your journey, Mike! It's a beautiful thing you are doing.

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  3. That is a wonderful story about how they met back up. Thanks for sharing. Good luck and God speed on your journey and adventure.

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